The HTC team will work with your local health care providers to help meet your needs or your child's needs. Research has found that receiving care at HTCs leads to fewer complications and hospitalizations, as well as a better quality of life for those with hemophilia.

To find an HTC located near you, go to the Directory of Hemophilia Treatment Centers on the Web.

What To Expect

If your child has severe hemophilia, you and your family will have things to cope with and adjustments to make:

• After diagnosis
• As your child grows and becomes more active
• As your child becomes a teenager

• Talk with doctors and other health care providers about treatment, prevention of bleeding, and what to do in emergencies.

• The care teams at the HTCs are excellent resources for education and support as well as treatment. The social worker on the team can help with emotional issues, financial and transportation problems, and other concerns.

• Many resources are available through the Web, and books and other materials are available from national and local hemophilia organizations.

• Look into support groups that offer a variety of activities for children with hemophilia and for family members. Some groups offer summer camps for children with hemophilia. Ask your doctor, nurse coordinator, or social worker about these groups and camps, or contact your local chapter of the National Hemophilia Foundation

To avoid complications, it is important that those with hemophilia:

• Continue any treatment prescribed for hemophilia.

• Get regular checkups and immunizations as recommended. Children with hemophilia normally get the same immunizations as other children but not as intramuscular injections. Vaccines for hepatitis A and B are recommended for those who are treated with blood transfusions. There is currently no vaccine for hepatitis C.

• Get regular dental care. Dentists at the HTCs are experts in providing dental care for those with hemophilia. If you see another dentist, tell the dentist that you have or your child has hemophilia. You or your child can receive medicine that reduces bleeding before having dental work.

• Know the signs of bleeding in joints and other parts of the body and when to call the doctor or go to the emergency room.

• Heavy bleeding that cannot be stopped or a wound that continues to ooze blood.

• Any symptoms of bleeding in the brain; this situation is life threatening and requires immediate emergency care.

• Limited motion, pain or swelling of any joint.

Hemophilia in Childhood

Challenges occur as your child grows and becomes more active. In addition to treatment and regular health and dental care, including immunizations, your child needs:

• A safe environment at home, at daycare, at school or at the babysitter's
• A healthy diet to help maintain a healthy weight for his or her size
• Education about the child's condition in a way he or she can understand
• Support in dealing with having chronic health considerations
• Reassurance that having hemophilia is not his or her fault

• Protect your toddler with kneepads, elbow pads and protective helmets. All children should wear safety helmets when riding tricycles or bicycles and should use the proper car seats or seat belts when riding in a car.

• Be sure to use the safety belts and straps in highchairs, car seats and strollers to protect your child from falls.

• Remove furniture with sharp corners or pad them while your child is a toddler.

• Keep out of reach or locked away small and sharp objects and other items that could cause bleeding or harm your child.

• Use cabinet locks to prevent your child from opening cabinets.

• Use electrical outlet covers.

• Use baby security gates to keep your child away from stairs and other areas where he or she could fall or be injured.

• Check play equipment and outdoor play areas for possible hazards.

• Keep a cold pack in the freezer ready to use as directed or to take along with you to treat bumps and bruises. Popsicles work fine when there is minor bleeding in the mouth.

• Keep a bag ready to go with items you will need if you must take your child to the emergency room or elsewhere.

• Be sure that anyone who is responsible for your child knows that the child has hemophilia. Talk with your child's babysitters, daycare providers, teachers, other school staff, and coaches or leaders of afterschool activities about when to contact you or to call 9-1-1 for emergency care.

• Consider having your child wear a medical ID bracelet or necklace. If your child is injured, the ID will alert anyone caring for your child about the condition.

• Learn how to examine your child for and recognize signs of bleeding.

Adolescence can be a difficult time for both the teenager and the family. Having to cope with hemophilia can be an added stress. As your child begins to take more responsibility for himself and his treatment, he will need education, supervision and support.

Teenagers can learn to:

• Recognize signs of bleeding and take appropriate action
• Keep a diary or record of treatment
• Do home infusions for themselves (with supervision)
• Exercise regularly and safely
• Avoid taking unnecessary risks
• Take care of teeth and gums
• Eat a healthy diet

Physical activity helps keep muscles flexible, strengthens joints and helps in maintaining a healthy weight. Children and adults with hemophilia should get regular physical activity, but they may have restrictions on what they can do safely.

People with mild hemophilia can participate in a variety of activities. Those with severe hemophilia should avoid contact sports and other activities that are likely to lead to injuries that could cause bleeding. The physical therapist at the HTC can develop an exercise program tailored to your needs and teach you how to exercise safely. Talk with your doctor or physical therapist about recommended types of physical activity and sports.

To prevent bleeding, you or your child also may be able to take clotting factor prior to exercise or a sporting event.

In general, some safe physical activities are:

• Swimming
• Biking (wearing a helmet)
• Walking
• Golf

• Football
• Hockey
• Wrestling

Some medicines thin your blood and increase the chance for bleeding. You should avoid medicines such as:

• Aspirin and other drugs that contain salicylates (sa-LIH-sil-ates); never give any child medicine that contains aspirin.
• Ibuprofen (EYE-boo-pro-fen).
• Other nonsteroidal anti-inflammatory drugs, such as naproxen.

Home treatment has many benefits. It allows:

• Early treatment of bleeding
• Fewer trips to the hospital
• More independence
• A sense of control over the disorder

Follow recommendations for storage, preparation, and use of clotting factors and treatment materials.

• Keep a record of all medical treatment.
• Know the signs and symptoms of bleeding or infection and what to do.
• Have someone with you when you do your infusions.
• Know the signs and symptoms of an allergic reaction and what to do.
• Know when to call the doctor or 9-1-1.

• Take adequate treatment materials along. Make sure to take enough clotting factors for the length of the travel.

• Get a letter from your doctor or your child's doctor describing your condition or your child's condition and treatment. Always carry the doctor's letter with you when traveling.

• Find out in advance where to go for care when out of town.

Clotting factors are very costly, and many health insurance companies will only pay for clotting factors on a case-by-case basis. It is important to know:

• What your insurance covers
• Whether your insurance has a limit on the dollar amount it will cover and what that amount is
• Whether there are restrictions or waiting periods

Education and Job Training

If you have hemophilia, it is important that you complete your education. Getting a good education and advanced job training "opens the door" to the kinds of jobs that are ideal for those who cannot do hard physical work.

Source: National Heart, Lung and Blood Institute, National Institutes of Health

Posted: March 22, 2007